Testing for others: My experience of participating in Kids-HD study

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February 25, 2015

When thinking about taking a whole day to put your brain to the test and have others evaluate you… it’s not the most comforting thought, but neither is being at risk for Huntington’s Disease.

I really never thought too much about it when I was asked to be involved in this study until just recently when I participated. I try to avoid the whole idea of being at risk for HD. Not that I’m in denial about it, but I just try not to over think it because there’s nothing I really can do about it. BUT WAIT. There is. Recently when I participated in this study, I felt like any time I did something wrong that maybe I am positive for HD. I had to push myself to think beyond that and remember that no one is perfect. Not only that, I didn’t want to be selfishly not participating in this study just because it made me self-conscious. I had to imagine what it could do to help others. What it could do to help ME. Plus, what’s 6 or 7 hours in the big scheme of things? Pretty soon those thoughts would be gone, but my results wouldn’t. These were results that could make a huge impact on finding out more about Huntington’s and a possibility of a cure in the future. All thoughts aside, I did the testing and it felt so good knowing that my results WILL lead to deeper study and more findings.

The University of Iowa is in the process of doing research studies concerning Huntington’s Disease with children up to 18 years of age. The study consists of a few different things to try to evaluate you. There are behavioral surveys for your parents to fill out, evaluation sheets for yourself, lots of cognitive tests, testing of motor skills, an MRI, (which you’ll get a copy of!) and some more new things that they have added.

The day normally begins with getting your basic stuff. You know, like when you go to the doctor. Okay, maybe that wasn’t a good thing to say because some of you may hate doctors. All they do is just check your vitals. No biggie. I guess I should mention that part of the study does involve getting your blood work done. I wasn’t too fond of that, so I just stuck to the spit test. After that, you have someone who walks with you through out the day doing the testing. The people there are very friendly and they understand if you can’t quite figure something out. They don’t push you to continue something you don’t want to do. Normally a Dr. comes in just to test your motor skills. You know, walk a line, tap your fingers, that kind of thing.

The day goes by pretty quickly because you’re always doing something. That doesn’t mean you won’t get tired though… I always start falling asleep after the MRI. I don’t think you would be normal if you didn’t get tired though.

So, why would you go out of your way just to have a day long of testing? First off, let me clarify. You’re not getting tested FOR the disease. They don’t even use your name. You’re just a case number so your results are protected. So, why would I do it? Well, first just because I want to be actively involved. Although it doesn’t seem like it’s making a huge difference, it’s making a bigger difference than if I decided not to. Just think. By participating, YOU are bringing researchers closer to finding correlations connected with the disease. Did I mention Dr. Peggy is amazing?! She is so super sweet and she loves it when people are actively participating. By participating, you’re making her job easier!

It’s a win-win situation. Really. Not only are you helping researches by giving them more information, you also leave $100 richer. That’s right. They pay you to participate! Too good to be true? That’s not even all. Depending on their budget, they will normally pay your whole way there and back (transportation, lodging, and food)! They do an awesome job taking care of you! Plus, you don’t even have to do any of the planning. Sonia does a fantastic job of getting all the details together so you don’t have to worry about a thing!

If you’re AT RISK for HD and you’re under the age of 19, I strongly encourage you to participate in this study. What if YOU were one of the reasons a cure was found? I know sometimes it’s hard to think about and you would rather just ignore the whole disease thing, but if we all chose to ignore it we wouldn’t be any closer to finding any sort of hope.

This document was downloaded from the HDYO website at https://en.hdyo.org/pro/news/346

Advice received via the HDYO web site should not be relied upon for personal, medical, legal or financial decisions and you should consult an appropriate professional for specific advice tailored to your situation.